We’re In Trouble Now

Jacob really has no self-care skills. We have to help him in all areas. Two of those are brushing his teeth and shaving his handsome face. It is a really great day when he is cooperative and those can be done sufficiently by either me or his dad. Seriously, it feels like I’ve won a major award and he deserves a trophy! Typically he resists in every way he can and it requires a team approach. And, sometimes Jacob still gets the best of us more times than not. We are definitely hands on. Both hands. Need more hands. Anybody give us a hand?

Recently we had a problem. On the very same day we, the parents, became ‘afflicted’. I woke up with poison ivy on both arms. Specifically concentrated around my wrists. Then while Mike was walking our golden girl, she spotted a cat and as she yanked the leash, it wound around Mike’s finger causing a spiral fracture. His hand looked awful and felt pretty bad, too. As a whole neither of those problems would or should keep us from doing most anything. In the scheme of things they were minor. But when it comes to Jacob, they felt major.

If you’ve read much of the blog you’ve probably seen more than a time or two mention of the fact that Jacob will strong arm me. Could be out frustration, fear, stubbornness, anxiety … who knows? It just means when he is trying to keep me from doing something, he will grab my wrist (ouch! poison ivy!) and squeeze, digging his fingers in, and lock his arms to keep me from accomplishing the task at hand. Often to remedy that situation, Mike has to intervene and hold Jacob’s arms so I can continue. This is mainly when it comes to the above mentioned shaving and brushing teeth nightly routine.

Realizing we were both practically out of commission, Jacob had us right where he wanted us. The honest truth was he got lucky and we didn’t force those two tasks because he would have inflicted pain on us purposefully or not. I was able to get him to cooperate a time or two but needed Mike’s help to really do a good job.

And then, it hit me. Maybe I could shave Jacob while Mike distracted him doing something he really loves. If that was the case we might all survive with no additional damage. So, as is Jacob’s habit most nights lately, he wanted an ice cream sandwich. Mike started helping Jacob and I turned on the electric razor. Have a bite, shave a little, have a bite, shave a little. It was pretty funny actually. I wasn’t able to give him a perfectly clean shave but I got him looking good enough that he didn’t resemble a hobo when he went to his day program the next day. I was super pleased we had gotten him presentable and no one suffered in the process.

Who would have ever thought to mix shaving and eating but it helped us when we needed it. Desperate times call for desperate measures so don’t go sending the sanitation police over here. It worked great that night, thank you very much. The idea popped in my head and it didn’t come from nowhere. God cares about the little details in our lives, you better believe it!

WE’RE IN TROUBLE NOW

I worked in the yard with watchful eye,
Poison ivy to be pulled from the fence up high.
Being as careful as could be, unfortunately it happened to me,
The poison spread on my covered arms, running free.
I’m in trouble came to my mind. Oh good grief!
I’ll need to quickly find some sort of serious relief.

He walks the dogs in the early morning,
A canine or feline may appear without warning.
Our dogs will not have it, their signal is clear,
‘Stay away, I’m telling you, do not come near.’
A jerk on the leash caused immediate pain,
A broken bone quickly registered in his brain.

My parents will have to take it easy he thought,
I’m sorry they’re hurt. But not tooooooo distraught.
Maybe for a few days they will leave me alone.
I’d hate to be the cause or hear them moan.
It didn’t last long enough I am sorry to say,
But ice cream while shaving made my day!

Make Your Own Fun

It had been years, YEARS, since we’ve taken Jacob to a movie theater. He loves music, colors, and animation. Typically, he gets plenty of that at home. The big screen is fun but not when you are worried about disturbing others around you.

Recently we learned that one of our local theaters, offers sensory friendly movies 1 or 2 times a month. Sensory friendly is advertised as lights up/sound down experience. You don’t have to sit through 20 minutes of previews before the feature you came to see finally shows. It is a relaxed setting for those with sensory sensitivities or other disabilities to attend without figure pointing. I so appreciate that someone decided that there was a segment of the population who needed and would enjoy that small change that could make a big difference.

We took Jacob to see Aladdin earlier this month. I knew it wasn’t animated but felt the singing and action could keep his attention. Being our first time, we got there early and planned to let Jacob just stay in his wheelchair. (Where he feels most secure.) While we waited for the show to start, he was very content. I was excited thinking of how great to have discovered something to do with him. Many families came in and most were a parent or two with young children. A perfect setting for a Saturday morning adventure.

Mike sat to Jacob’s left and there was a wide empty space to Jacob’s right. The movie started and Jacob was fascinated. I was sure I would spend more time watching Jacob than the movie. My heart was happy that he was so interested. About 20 minutes into the movie though, he got bored. First, he turned around and reached for the family in the row behind him. Mike quickly intervened and apologized. They were kind and not bothered. Mike moved Jacob’s chair up so he couldn’t touch them. Then Jacob decided he would bother his dad. He proceeded to pull on his shirt, his hair and do whatever he could to annoy Mike. Fairly quickly, Mike moved Jacob away from us to an empty space hoping he’d focus on the movie. Nope. Jacob strained toward the family in the row in front of him. At that point, we knew the movie wasn’t going to hold his attention and we didn’t want to wrestle with him for 90 minutes.

As soon as Mike told Jacob we were leaving, Jacob calmed immediately. Disappointed it wasn’t a winner for Jacob, we were okay, ‘at least we tried’. On the way home, Mike said they’d drop me off and then he wanted to just take Jacob for a long ride in the van. They both enjoy the scenery and it was a beautiful day to do it.

An hour and a half later, they came home. Jacob’s shoes were covered in dust, his face red, and he was sweaty. Not exactly what I expected from a ride through the country. Seems Mike decided to go to a nearby park and see if Jacob might like to walk around. And he did! They had thoroughly enjoyed their outing and Mike had made their own fun. The morning didn’t go as I expected but the end result was what I hoped. Jacob had a great morning!!

I am so very thankful that Jacob has a dad who invests time in his life. Through the years I’ve known too many families where the dad literally walked away. Could not handle parenting a child who needed some extra attention. Not my man. On the heels of Fathers Day I want to say he is the best and exactly what Jacob needs. Yes, Jacob hit the jackpot when it comes to his daddy!

Kiss the Girl

Jacob communicates in many ways. Actually, he is communicating in one way or another in everything he does. He has always loved music. The radio, a toy, a cassette tape player, CD, MP3 player, or a television program. He finds joy and happiness in tunes. I think we’d all agree music is a wonderful way to communicate.

Years ago, Disney produced a series called Sing-Along Songs. Pulling from different Disney movies, each was a collection of songs with lyrics printed making it easier to ‘sing along’. They came out on VHS tapes when he was about 10 years old and were perfect entertainment for him. I think we had every single one of them. Some of his favorites were Fun with Music, Zip-a-Dee-Doo-Dah, The Bare Necessities, and Under the Sea. There were a few that we bought multiple copies preparing for the day his favorite would wear out.

While Jacob might have trouble inserting a tape (cassette or VHS), he has no problem pushing buttons to operate the player. Fast forward, rewind, pause, and play. He was very adept and would often focus on one song or even just a phrase and play it over and over again. It was quite amazing how he knew exactly how long to hold a button down to get it to the point he wanted to hear. Not surprising as he has a great sense of timing.

One of his favorite tapes was the one titled, Under the Sea, featuring different songs with water themes. It had a couple of numbers from The Little Mermaid. When you hear something repeatedly two things can happen. One, it seems your senses are dulled and it gets to where you don’t notice it any more; and two, repetition can have the reverse effect and plant a song in your mind where you can’t get it out of your head. For the most part, I’m able to tune out, not really paying attention to what he listens to. Maybe I’ve had too many stuck in my head.

One day however, I realized how intentional he was being in his selection and repetition. It’s a favorite funny story about Jacob playing a phrase over and over again. Using the rewind button for one certain part. Our other son and his fiancée would often hang out at our house. They were in college in a neighboring town and it wasn’t unusual for them to spend free time with us. On this particular afternoon they were at our house and Jacob was happily playing in his room. Listening and watching a video while he danced. At some point I zeroed in on what he was repeating and the song went like this:

You’ve got to kiss the girl. Why don’t you kiss the girl? You gotta kiss the girl. Go on and kiss the girl!

Oh my goodness. It was hilarious. He was clearly giving his brother advice. And was going to keep on repeating it until he was sure it sunk in and he took action. Now I wasn’t monitoring the situation to embarrass them but Jacob was and he was trying to make a point.

There you see her
Sitting there across the way
She don’t got a lot to say
But there’s something about her
And you don’t know why
But you’re dying to try
You wanna kiss the girl
Yes, you want her
Look at her, you know you do
It’s possible she wants you, too
There is one way to ask her
It don’t take a word
Not a single word
Go on and kiss the girl
Sing with me now
Sha-la-la-la-la-la
My, oh, my
Look at the boy too shy
He ain’t gonna kiss the girl
Sha-la-la-la-la-la
Ain’t that sad
Ain’t it shame, too bad
You gonna miss the girl
Now’s your moment
Floating in a blue lagoon
Boy, you better do it soon
No time will be better
She don’t say a word
And she won’t say a word
Until you kiss the girl
Sha-la-la-la-la-la
Don’t be scared
You got the mood prepared
Go on and kiss the girl
Sha-la-la-la-la-la
Don’t stop now
Don’t try to hide it how
You wanna kiss the girl
Sha-la-la-la-la-la
Float along
Listen to the song
The song say kiss the girl
Sha-la-la-la-la-la
Music play
Do what the music say
You wanna kiss the girl
You’ve got to kiss the girl
Why don’t you kiss the girl
You gotta kiss the girl
Go on and kiss the girl

Kiss the Girl Songwriters: Alan Menken‎, ‎Howard Ashman

If that wasn’t communicating, I don’t know what is. Way to go Jacob!

I Haven’t Forgotten

And doubt I will. It’s like this, in Jacob’s lifetime we have been blessed with so many people who have supported us in beautiful, memorable ways. Truly I am blown away by the kindness and goodness of those around us who love us without limits. Cherished is what they you are.

And while we have both received authentic encouragement and valuable wise counsel, some words have been so powerful, they will not be forgotten. This spring we attended an event where the emcee listed the many people who had made the evening possible. There was a round of applause in appreciation of their efforts and the concert continued. At some point later, he returned to the microphone and said, “well, I forgot to name one person, perhaps that is why you shouldn’t thank anyone.” Laughter erupted and the one person not mentioned earlier got their own round of applause. All of that to say, this is not an all inclusive list of people deserving a thank you. I would most certainly forget someone! Today’s post is about three friends who have made a difference in my life. Beautiful thing is, they did it without even trying.

I’ll start from way back over 30 years ago. One of our neighbors had 3 young children and I had two. She was at our house one day and I was frustrated about Jacob (who was no longer a toddler) eating with his hands instead of using a fork. He was absolutely not interested and I was not making any progress. She kindly said to me, “you know it’s okay if he eats with his hands. Whether it is pancakes with syrup or green beans. Let him do it. For your own sanity.” Goodness I needed that. Obviously I wasn’t seeking permission but what a gift to be reminded that my sanity was important. It was probably one of the first times I considered that taking care of myself would help me provide the best care for my family. Through the years I haven’t forgotten that comment and no doubt that friend is part of the reason I am somewhat sane today.

Next. It was 2006 and I had an appointment with my pastor. We were meeting to discuss an upcoming wedding that he would officiate. I came with my prepared notes to make sure he knew the outline and plan. The details were covered and I gathered my things to leave. And then he surprised me, “what’s it like? What’s it like to have a son like Jacob?” A simple, simple question. One I struggled to answer. Not because I couldn’t, but because I didn’t recall anyone every asking. In those words. I was almost left speechless by his sincerity. By his curiosity. By his genuine heart. By his willingness to ask a question that others have no doubt wondered but were hesitant to voice. To this day, as I type this, I am reduced to tears. This blog wasn’t born from that question but is pretty much an answer to it. I have expressed my appreciation to him for his interest in my family. It is a question that touched me deeply. It is a question I haven’t forgotten.

And more recently – a long, long time friend has blessed me through the years with short, unexpected Facebook messages. This friend and I grew up near each other in a great neighborhood where days were spent riding bikes, playing kickball, and walking to school. Endless games of chase, boys against girls, and tattle tales (as I’m often reminded). The kind of childhood you look back and say, ‘those were the days’. Every now and then I’ll get a message from this friend that basically conveys, ‘you can do it’. And as God does, he uses my friend to send me those just when I need them. A recent message, though, went straight to my heart. Part of it said, “You don’t fully appreciate how rare you are, and how qualified YOU are for YOUR life.” Okay people. I am sure you’ve read enough here to know how unqualified I have felt at times when it comes to raising Jacob. What mom doesn’t have those feelings? Tears flowed. I will never forget those words of encouragement. Healing words to my soul.

As mentioned earlier, there are hundreds of people in our lives that have cared for us over and over again. Those have truly been the hands and feet of Jesus and I am forever grateful. In being real and honest about what autism looks like in our family, I put myself in a vulnerable position. Part of that is in hopes of helping others. And honestly, part of it is therapeutic. The comments received through Facebook, texts, emails, and even sweet notes in the mail, are each an amazing gift. Each are so very helpful and so very appreciated. You never know when a comment will become etched in one’s mind. Your words may be exactly what someone needs to hear whether you realize it or not.

Lord, I remember what you have done. I remember the amazing things you did long ago. I think about those things. I think about them all the time. Psalm 77:11-12 (ERV)

Through blogging, I’ve learned that putting stories on paper helps me to see God’s hand over and over again. I think about how He has used you to speak love and support to me. I wish I could thank everyone that has touched my heart both knowingly and without awareness. Please know that I hold comments closely and they are fuel when I’m running on empty. Thank you doesn’t seem sufficient but it is what I have to offer.